On Rare Disease Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

On Rare Disease Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email On Rare Disease Day, what's wrong with a bit of Neuroendocrine Cancer awareness?  Well, there are three main things wrong with Neuroendocrine Cancer awareness: 1. The incidence and prevalence of Neuroendocrine Neoplasms (the combination of Neuroendocrine Tumours (NET) and Neuroendocrine Carcinomas (NEC)) have skyrocketed in the last 40 years to the point that many scientists, epidemiologists and Neuroendocrine specialists are starting to use different terminology, commensurate with the math. Read more by clicking here or on the picture below.  Let's do the math not the myth. 2.  Linked to the issue above, the community remains entrenched in 1907 terminology which needs bringing into 2021. Things have moved on so much but the…
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My treatment is a pain in the butt!

My treatment is a pain in the butt!

Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email The post header is a bit ‘tongue in cheek’ (…. did you see what I did there?)  I’m very happy to have this treatment every 4 weeks – I can think of far worse scenarios. When I was first diagnosed, the dreaded word ‘Chemo‘ was discussed.  Chemo isn’t particularly effective in treating the lower grades of Neuroendocrine Cancer but it is used extensively at high grade and often in Grade 2 showing more effectiveness in pancreatic NETs.  Looking back though, my Oncologist may have meant in conjunction with a liver embolization (i.e. TACE) on the basis this was scheduled once in June 2011 following liver surgery. Prior to my diagnosis,…
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Ronny Allan – Top 10 for 2020 – Neuroendocrine Cancer

Ronny Allan – Top 10 for 2020 – Neuroendocrine Cancer

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 2020 was a different year due to the pandemic and it has spilled over into 2021 - this has had the effect of being slightly down on the 2019 figures.  I also changed tack on one of my pages adding a 'coping' theme rather than writing new blog posts.  This also had the effect of reducing blog hits for the year but very happy under the circumstances. Much of the effort in 2020 was directed in building up my private group, the fastest growing and biggest NET group on earth Of the approximately 336,000 views of my blog site in 2020, the top 10 articles account for almost 70,000.  They…
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Neuroendocrine Cancer: Follow up tests and checks

Neuroendocrine Cancer: Follow up tests and checks

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Since 2010 I’ve had a lot of surveillance and testing. More than ordinary people can imagine. I can see from various comments on my public pages and posts within my private group, that some people get a lot more than I do and some get less. It’s not true to say we all get the same, there are many factors including stage, grade, type of Neuroendocrine Neoplasm, healthcare system, miscellaneous problems, therapy, even age.I have metastatic small intestine NET.  In the first year or two after diagnosis, I seemed to be in an almost continuous testing phase but that was mainly due to seeing so many different doctors for so…
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Neuroendocrine Cancer – I didn’t hear it coming

Neuroendocrine Cancer – I didn’t hear it coming

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email The sooner any cancer can be correctly diagnosed, the better chances of a curative scenario for the person concerned.  However, some cancers are in the 'difficult to diagnose' category. Certain types of Neuroendocrine Tumours (NETs) are in this difficult to diagnose category due to the vague symptoms which may be mistaken for other diseases and routine illnesses.  However, in many cases which don't seem to make the statistics, it can be incredibly quiet leading to incidental diagnosis including at an advanced stage. It's SNEAKY! Every year the advocacy organisations push out skewed statistics, but few take a wide enough view to get the full spectrum of patient experience.  I accept…
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Opinion: On World Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

Opinion: On World Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email On World Cancer Day, what's wrong with a bit of Neuroendocrine Cancer awareness?  Well, there are three main things wrong with Neuroendocrine Cancer awareness:1.  The community remains entrenched in 1907 terminology which needs bringing into 2021. Things have moved on so much but the use of this ancient terminology and what it infers, just keeps us marking time in the last century. It does not do us any favours in awareness terms, nor does it do us any favours in clinical terms.  If clinicians, scientific organsiations (including pharma) and patient advocate organisations will not move on, we as patients and advocates need to pull them along with us.   We need…
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